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Poor growth in 7 yr old, I need your advice please, please

(10 Posts)
IAmOptimusPrime Wed 26-Feb-14 21:06:13

My ds had a growth appointment today and we have been told that although he is now growing at the expected rate per month the lack of growth before this cannot be caught up. His growth hormone is as it should be as is his bone age but he is low in vit d. At the moment he is predicted to be 5ft 5.

He is 7, nearly 8 and is 114cm, the smallest in his junior school and smaller than his 5 yr old brother. He is now very conscious of his height and sensitive to it. He was on the 50th centile at birth but now on the 0.4th. He has suffered from allergies since he was 6 months but has outgrown all but egg & dairy allergies. He is asthmatic too and had sleep apnea and glue ear until he had grommits and adenoids removed 18 months ago. I have to buy him clothes for 4-5 year olds.

They think the slow down in his growth is due to his allergies/diet. Believe me I have tried my hardest to get all he calories fats etc in to him and have had so many conversations with allergy consultants and dieticians but have always been told all was ok. I now feel very guilty that I didn't push things further with them or that I have failed him.

Apologies for the life story but wanted to include all the details. I just feel so sad for him, more because he is now conscious of it and compares himself to others and his brother. He has sobbed over sports day, that he will never be as fast as everyone else. (He is fast but 5 of his steps are equivalent to 1 of his friends) It probably doesn't help that I am 5ft 10.

So how my question is how can I give him the confidence he needs or boost his self esteem? What can I do? How do I set him up for the future? Any advice really would be welcome, he is adorable, still quite young looking and cute which people comment on but I believe doesn't help the situation.

I know in the big scheme of things this is not the most terrible thing that could happen. He is healthy and I know there are others on this board who are dealing with heartbreaking situations. I hope that doesn't come across as patronising.

Iseenyou Wed 26-Feb-14 21:20:08

Message withdrawn at poster's request.

IAmOptimusPrime Wed 26-Feb-14 22:18:11

Thank you Iseenyou, I think the martial arts makes a lot of sense and something he would enjoy.

Just found out Harry Potter is 5ft 5 so that should help my cause.

MistyB Thu 27-Feb-14 18:51:44

Are you supplementing vit A and D?

What are his allergies?

I have a tiny age 7 girl, changing diet seemed to have worked for her, I slipped back on the vitamin a and d and cod liver oil and she has gotten smaller!! sad Back on the vitamins!!

IAmOptimusPrime Thu 27-Feb-14 21:05:49

Hi misty, just seen this. I have just started on vitamin d3 drops and probiotics to help his gut.

His allergies now are dairy (inc sheep and goat) and eggs. He used to be allergic to sesame, lentils, peanuts and tree nuts. He has grown out of these which is pretty amazing. When he was 10 weeks old he was very il, suspected meningitis, so was treated heavily with antibiotics and I'm sure this has been a contributing factor to his allergies as it must have killed anything good in his gut. I'm sure he would have always been an atopic child to an extent as asthma and eczema are in the family but not food allergies.

henryhorrid Sat 01-Mar-14 22:24:28

We were told similar and DS was found to be growth hormone deficient last year despite having been fobbed off for 6 years!!

Have you actually had the stim test done? Were you under an endocrinologist? You can see Dr Stanhope privately at the Portland in London for £200 for an initial appointment. Best £200 we ever spent and we already had diagnosis and treatment as so much better than the NHS.

DS was 110cm at age 8 and had not been too upset by it but the bullying started once he went into juniors and his much younger brother caught up in height. We were lucky that we just got treatment in time before he overtook. Even if IGF1 results were normal you can still be GHD.

If you cant afford private speak to the Child Growth Foundation. They were the ones that told me we were being fobbed off and that he should be given a stim as he met all the criteria and off course they were right. It is very easy when there are other medical problems to blame them for lack of growth as they did in our case.

Dropping off the centiles or being more than 2 centiles below expected height based on parents heights are both reasons for further testing.

The NHS told us DS's bone age was same as his age whereas Dr Stanhope confirmed it was over 2 and a half years behind. They need experience to read the bone age correctly.

The GHT has been fantastic and DS is seeing catch up growth. Good luck. Very happy to answer any further questions.

LatinForTelly Sun 02-Mar-14 00:09:03

I'd second both Dr Stanhope and the Child Growth Foundation.

The Child Growth Foundation is a hugely supportive organisation. They have a website and a Facebook group to which you can ask to be invited.

IAmOptimusPrime Sun 02-Mar-14 12:36:22

Hi henryhorrid. Your post is very interesting and gives me hope!

I've just looked up his consultant and she is a paediatrician with an interest in endocrinology. His blood test came back with normal IFG1 results, his bone age was relative to his age according to them. We have never had a stim test, not even heard if it before. Did you have that privately or on nhs? He is definitely more than 2 centimes below expected height based on parents height.

So does your ds have growth hormone at the moment?

So many questions!

henryhorrid Sun 02-Mar-14 20:14:49

The stim test (stimulation) test is not a nice test and they don't do it lightly. We had it on the NHS but it was after being fobbed off from age 2 to 8. Usually it is done after a low IGF1. We only got it done because we saw a leading Gastroenterologist privately who wrote to our NHS paediatrician and said he didnt believe the gastro problems were causing the lack of growth and recommended referral to an NHS Endocrinologist. Without this intervention I dont think the NHS would ever have diagnosed it.

For us the test involved a day in hospital having bloods taken every half hour in the morning whilst fasting and being stimulated with glucogen I think which affects blood sugars and can makes child sick/sleepy etc then some time in the afternoon to recover. Do ring the child growth foundation as they are very helpful and lovely.

Yes my DS has been on GHT for a year and has grown 10cm versus 1.2cm in the year before treatment!!! All funded by the NHS and it is a very expensive drug. It is not great having to do daily injections but well worth it compared to the alternative. We are likely to have to do them at least until he is 18, maybe for life.

DS was 4 standard deviations below the 0.04 centile so it is really shocking we were fobbed off for so long as strangers were making comments all the time. In fact they still do after a years catch up growth.

The important thing to remember is that GHD affects so much more than growth. It can affect muscles, appetite, overall health, heart and bones so needs treating regardless, hence why some children need the injections for life.

If you can possibly afford £200 and a trip to London I would really recommend it as Stanhope can get you referred to the most suitable place and all the endocrinologists take note of what he has recommended so you cant then be fobbed off. Seriously I would take a loan to do so if you dont have the money as it wont be quick on the NHS and in my experience the height was not such an issue until junior school. Also if you can get a diagnosis we found school then stopped all bullying as we quoted disability discrimination whereas before the diagnosis they were telling DS to ignore comments about his size and did not take it seriously. School now also allow his to miss sports day due to the distress it causes him in races etc. A total turnaround for the better since diagnosis.

We would have happily paid far more to see Dr Stanhope. DS’s height had been monitored by a Consultant paediatrician since age 2 but Stanhope was the first person to measure DH and me and the first person to measure his sitting height or even really to look at the whole picture from birth and to conduct what I would consider a proper appointment with clear cut answers not waffle. The NHS appointments are so short and woolly in our experience.

We have found that the NHS usually blame the parents first or assume it is lack of food or such rather than correctly investigating a medical diagnosis first and in my experience the only solution is going private. Sadly this experience of misdiagnosis has applied to my other DCs too but for totally unrelated conditions.

I am not suggesting in your case that it is GHD in your case just that it should be properly investigated by an expert as allergies and lack of intake do not typically cause such a lack of growth. How tall is his father?

Very happy to help further.

MigGril Sun 02-Mar-14 20:25:43

you also said he has asthma. Does he take any steroid inhalers at all? They are know to inhibit growth in young children. It's a side effect, normally seen while taking them. They can catch up if they grow out of the asthma.

The problem being its asthma itself can also stunt growth, especially if not well controlled.

So he could be suffering reduced growth from more then one angle.

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